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Cait.Telaak

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1 reviews

Review for Cholangiocarcinoma Foundation, Herriman, UT, USA

Rating: 5 stars  

I was diagnosed with cholangiocarcinoma in November of 2015. At the time I was 28 years old, and no one in my immediate support circle had dealt with cancer before, much less a rare and difficult to treat disease like chonagiocarcinoma. The evening of my diagnosis I turned to Google. The first link I clicked provided a dire (and outdated) summary of what I was up against, and it took no small amount of will to subject my emotions to a second click of the mouse. I am so grateful that I did.

The Cholangiocarcinoma Foundation's website was the second that I visited laying in my hospital bed that evening, and it turned into my homepage in the months that followed. I signed up for the discussion boards, and a fellow patient called me on a Saturday to connect and help me navigate the resources. When I needed help understanding the jargon, I used the Foundation's resources and Newly Diagnosed section. When I was hungry for hopeful updates around scientific progress, I watched videos from the Foundation's annual conference. When I was scared of how treatment might change my body and my life, I posted my questions on the discussion boards and was flooded with answers and love.

I am now over two and a half years into my battle with cholangiocarcinoma, and the Cholangiocarcinoma Foundation continues to be a fixture in my life, both in ways known and unknown. I still rely on their resources for support and scientific enlightenment, but I also benefit from the research they sponsor and the connections they are building between physicians around the world. The Foundation serves as a pathway for medical collaboration, something that I as a patient may not see, but benefit from as these brilliant minds work together towards a cure.

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